Lipeodema! Why me???

Hi all, I'm new on here and this is my first time of posting. I'm 45 years old and have since a teenager wondered why I look so different and why is it me that can't wear the lovely clothes the same as my friends, why am I the one who turns down holidays because I'm so embarrassed about the way I look and the thought of having to go to a beach or sit by a pool makes me feel physically sick. Why does everyone else look forward to the Summer and hot days but I dread it because I hate summer clothes! I've always thought it was just me I didn't realise there were other people out there that looked the same! There have been so many tears over the years and asking my mum why do we look like this...her answer was always 'unfortunately you've got the same shape as me and your grandmother, there's nothing we can do about it'. It's only recently I saw something in a magazine about lipeodema and realised that being the way I am isn't my fault. Since reading about it, about two months ago, I have just eaten and eaten because in my mind I thought why not, you're fat anyway and there's nothing you can do about it now., I've put on about a stone! My self esteem is very low and I hate myself, I hate the way I look...I'm always looking at others and comparing myself to other people I think 'I'm not as fat as her how come she can still wear shorts or a lovely dress or feel confident by the pool' anyway this week I've tried to pick myself up, realise that my eating is getting out of hand and that I don't need to punish myself by getting even bigger...yesterday I finally plucked up enough courage to go to the doctor, even the thought of having to show a doctor my legs made me panic and feel ill! She was quite nice but as I suspected from what I have read she had never heard of lipeodema and said it was due to my lifestyle...I tried to explain that all my life I have been trying to lose weight, and when I was younger would spend a lot of time in the gym but nothing would change. She said she will send me for a blood test...I showed her my GP pack, she had a quick look at one leaflet and said 'it says here nothing can be done about it anyway' I told her there is a treatment called tumescent liposuction to which she replied 'not on the NHS you'd have to go private and do your own research as to where to go' She said there is no where within the NHS she can refer me too. I asked her if she would like to keep the GP pack to read more about the condition but she said no you can take it with you. I came out of there disappointed but glad I had made the first step and to be honest after what I had read about getting a diagnosis it was what I expected! I'm sorry this is such a long and boring post, this is the first time I have tried to write down/talk about my feelings..does anyone else feel the same way?? I think my next step will be trying to lose the excess weight and find a private clinic to help me, does anyone have any suggestions or advice on where to go please, I know it will be expensive but I'm desperate to change...I just want to feel normal..! Apologies again for such a long post!!! xxx

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I'm so sorry you are going through this

I also have lymphedema the Dr say -well some dr say I do and some say no I don't Idk I have been trying to find information about it online for a long time I have had the situation for 2 yes now I believe and I am so greatful to have found this site I am in the USA and the information out here is not to much

I understand the question and sadness I am greatful for the family I have they help me so much I am also over weight and have a heart and lung condition it's hard for me to walk so it's hard for me to lose weight my daughter has joined weight watchers online and wants me to I think I will some time this week she said it about -$10 or something

Maybe that could also help you You can email me if you ever feel you need to talk I may take a few to reply but I will check in

So glad you found this site hope to see more post from you it will be ok it is hard but we will be ok

God Bless

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Hi SoSad45, I am sorry you are going through this. I too have lipodema, but haven't had a diagnosis yet. I have a GP appointment in a couple of weeks and am hoping to get some understanding and help. I'm sorry your doctor was so unhelpful. Are you on Facebook? There are lots of Lipodema pages and groups and they will give you loads of advice and support. One is Lipodema Talk and Lipodema UK. Please have a look, you will feel lots better and get so much help from them. You can ask questions and get helpful answers. Good luck!

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I understand exactly what you feel .. I too was told that.. you are like your Gran and Auntie but now I understand and it was a relief to find out that it is not my life style. I eat very healthily and exercise but photos of me are horrible and even at 68 I would still love to wear pretty dresses and not baggy trousers !

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Hi gorgeous ladies - welcome sosad45 - I hope that you can turn your name around, into sohappy45. Looks like we are all in a similar boat. We need a glamorous magazine, with us 'normal' ladies looking gorgeous, wearing beautiful summer/winter clothes and bathing suits etc. It is not fair that our legs wobble and hurt (well, mine do). It is not fair that even when eating and exercising healthily our shape remains. I understand the depression and low self-esteem business. Golly. A tip from my experience - when I was around 42, I decided - I can't afford to gain extra weight before I hit menopause, cos these legs are going to explode. My shape changed dramatically in puberty from 'average' to golly-look-at-those-knees-thighs-butt. So, I joined weight watchers, exercised 6 days a week (high intensity) and set a goal of losing 10kg by my next birthday - and I did it. The weight shifted, and the legs stayed (smaller, but I will never have skinny legs unless I go for liposuction). And, I was seeing a counsellor at the time to deal with my low self-esteem and stress. What have I learned? It is really difficult to deal with this on your own - get as much help as you can, be kind to yourself, and BELIEVE in yourself. You cannot change your genetics, but you can take more control. Make yourself your number 1 priority and believe in yourself. If anyone puts you down or doesn't help you, walk away. Now, I'm feeling pretty miserable at the moment and my weight is creeping up - so I'm filling the fridge with vegetables (gotta stop buying the carbs) and re-enrolling with my gym today. You are normal!! You can do this. xoxo

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I decided when I was in my mid 40s that nothing would ever make me as slim and shapely as my sisters, believe me it is hard growing up when elder sister looks like a fashion model and little sister looks like a fairy doll and you look like a female rugby player !! So I took stock of my life.. threw away diets and got fit, I took up swimming and water exercises going at least 4 days a week.. cut right down on sugars and saturated fats (I was a chef nutritionist/ dietician in our local cottage hospital so understood food) I lost a little weight from around my middle but hips and legs stayed much the same.and for the past 25 years that has been my life. I am now 68 apart from under-active thyroid, OA and of course lipodemia I am still very fit and healthy. I can bend and put both hands flat between my feet, I do deep water aquafit twice a week and go to all ladies gym with swim after twice a week. Ladies if you want to swim it is a very good exercise and please do not let your low self confidence hold you back.. find a ladies class or over 50s and take the plunge , there will be fat people in the pool or others with less than perfect bodies and after the initial few stares because you are a new face and not because your bottom is the size of a small planet ! soon you will be part of the group and may even find friends and confidence. As for swim wear , a swimdress looks feminine but I wear a 2 piece from a company called BOHN check them out , you can buy tee tee shirt or vest type tops and shorts leggings and skirts , expensive but they not only last a very long time , they make you feel good. I do have to put a cord through the shorts waist band but then I buy size 24 shorts and have a 35 inch waist . Yes my legs always ache and are painful to touch but I am what I am and am blessed with a happy nature.

I got married a few days ago to my long term partner, Bob and I have been living together for over 15 years and he is 15 years younger than me and already I am looking at photos and saying.. ug not that one , I look so fat !! We are normal ,Raquel Welch once said , her face would be perfect except for her eyelids being heavy ! so even the most beautiful women have self doubts :) hugs to you all my lovely ladies.

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Dear Sosad45- I completely know what you mean, especially about summertime! I see other women in jeans and wonder 'where the heck did she find them and it's so unfair she can get into them when she's as large as me' even though she's a different shape! Sorry to hear your GP pretty much slammed the door in your hopeful face, I would have though being a woman she'd be more understanding actually but she probably considers herself too busy to learn anything new. Don't take no for an answer, try again, she has to see you if you ask for her time, hopefully she'll get fed up enough with you so she'll do the reading and change her mind. You could also just ask her to refer you to a local dermatologist or even the specialists mentioned under the Lipodema UK website? Good luck!

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Good morning I know how you feel but I did my research by emailing all local hospitals and asking them to you have Lipoedema/lymphoedema clinic. If not could you tell me where there is one. Where do you live because the Luton and Dunstable hospital and Mount Veron near Watford in Hertfordshire. The other thing I did was contact the private hospitals and ask the same question. Don't take no from your doctor try a different doctor in the surgery or change your doctors. We have a right to be heard.

My heart goes out to you. I will post what happens on Friday.

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Hi SoSad45

You are no longer alone but you do need a proper diagnosis;

Firstly take a look at the Talk Lipoedema website, there's lots of information that you can take back to your GP, and while there is no miracle cure there are things you can do which can help. Are you able to get an appointment with a different GP? Take the information again and ask for a referral to your local Lymphoedema Clinic, if they won't refer you then contact your local hospital and ask for the Lymphoedema clinic and then explain that you think you have Lipoedema and ask them if it is possible for you to self refer to get a diagnosis. While private treatment for tumescent liposuction is a possible option for some sufferers many of us are not suitable/ can't afford/ choose not to have this, and I certainly wouldn't advise anyone to go straight down the road of a series of surgeries before they have come to terms with a diagnosis and tried other ways such as compression and diet to manage it.

Personally I have primary Lymphoedema and Lipoedema so for me a diagnosis was a huge relief, suddenly this was not my fault and my diagnosis meant that I started my 'new life' without blaming myself. I'm lucky as I live in Wales so I wear compression which is prescribed for me, I also started following slimming world 2.5 years ago, I do it as an online member as when I started I was housebound, I've now lost around 7.5 stone if non-Lipoedema fat and although I've still got more to lose it's now a lot harder. Are you are on Facebook? If so join some of the support groups, Talk lipoedema is a fantastic group for information and there's also Talk Lipoedema Private Chat, this group is a closed/private group where you will find thousands of fellow sufferers who will support you, and offer help. Depending on where you live you may actually find there are ladies local to you who you can meet with, locally to me there are around 10-12 of us and we've met on 2 occasions, it's almost liberating not being the only one in the room.

I hope the information that we've all offered helps you and hopefully we'll 'see' you on FB

Be kind to yourself 💐

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Hi...thankyou all so much for your positive replies...jaberwocky, Congratulations on your wedding, I hope you had a wonderful day! LadyLO7..well done on losing 7.5 stone..what a wonderful achievement. Wombat64 have you had your Dr's appointment yet? My update is that I've had my blood test, and everything has come back normal. Tomorrow I've got an appointment at the Lymphoedema clinic...I'm really hoping to get some answers and come away feeling more positive...will let you know how it goes!!! Thankyou again everyone...it was so lovely and reassuring to read your replies xx

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Hi

I have just joined this and read your message on how you felt and I swear you could have been writing about me .

I am 49 and as a child always thought I had adult legs

I have 3 sisters and a wonderful mum all who have beautiful legs

I’m not overweight but I’ve been cursed with these disgusting legs all my life

Oh how I would love to learn to swim or go on holiday and go in the pool

I wonder how you are now and if you have managed to get some help

Take Care

Barb

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Hi Barb, thankyou for replying to my message. In October I went to the Lipeodema conference in Sheffield which I must say was brilliant, I’m so pleased I went. I met some lovely people and it was so good to be able to talk to people going through the same thing as me. I met Mr Karri who has his own practice called The Karri Clinic, he was lovely and very supportive, I have an appointment with him in November for a proper consultation. My self esteem is still very low and I’m having a lot of difficulty losing the weight I’ve gained..i just can’t seem to get myself properly motivated but I am feeling a lot more positive knowing now that there is something that can be done about it. Good luck to you and whatever steps you decide to take in the future xx

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Hi ,

Was really nice to hear from you and that you now have some hope .

I have spoke toMr Karri and he seems lovekyso once I have had my appt with my vascular surgeon I am going to make an appt to see Mr Karri also it’s just such a massive expense and terrible that no help if offered from the NHS .

I have been told there is places in Germany that are great too

I wish you all the luck in the world

Barb

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